Lianna Munir: A Bright Future, Thanks to CAR T-Cell Therapy

Eight-year-old Lianna Munir is bursting with energy again—running, laughing, and learning her way through 2nd grade. But just 2 years ago, her family’s world was turned upside down when what seemed like repeated colds and fatigue led to a diagnosis of a rare and aggressive form of Philadelphia chromosome (Ph)–like acute lymphoblastic leukemia (ALL).

Lianna had always been an active child who loved swimming, soccer, and cooking with her mimom and pop-pop. “I couldn’t force her to come in the house after school or sit down,” recalled her mom, Adrian Horn. “Then, she just started slowing down a lot and it was not like her. So that’s how we knew something was wrong.” At first, doctors thought she had strep throat or tonsil issues. But one night, Lianna, then 6, fainted at home, prompting an emergency trip to the hospital. After several visits and a series of tests, she was medically transferred to Children’s Hospital of Philadelphia (CHOP), where doctors would eventually confirm the unthinkable—Lianna had leukemia.

After a 2-week stay at CHOP, where Lianna received multiple blood transfusions, she seemed to be getting better and was sent home without a definitive diagnosis. However, after just 3 days at home, Lianna’s symptoms returned, and the family headed back to CHOP. The news came around 1:30 a.m. that night. “Five doctors walked in and said: ‘We believe it’s leukemia,’” Adrian recalled. “I was in shock. I just wanted information. I was like, ‘What’s our next step?’”

Lianna began intensive chemotherapy immediately. Initially, her care team expected good results. But genetic testing revealed her Ph-like ALL had a PAX5::JAK2 fusion marker which is known to resist standard treatments. After 3 months of chemotherapy, her bone marrow still showed more than 70 percent leukemia cells. Lianna’s care team, including pediatric oncologist Dr. Susan Rheingold, advised harvesting her T cells to prepare her for a form of immunotherapy. “CAR T-cell therapy, which is an immunotherapy whereby we take T cells, one of the body’s own immune cells, out of the patient,” Dr. Rheingold explained. “We then genetically manipulate them so that instead of going back in and attacking things like viruses, they attack the child’s leukemia cells.”

Adrian said they explained it in a way Lianna could understand. “They told her, ‘We’re taking your cells from kindergarten and sending them off to college, and eventually you will get them back,’” adding that those cells would then fight her cancer.

Before reaching that point, Lianna experienced a multitude of treatment-related side effects, including a new diagnosis of supraventricular tachycardia (SVT)—an irregularly fast or erratic heartbeat—severe allergic reactions, temporary whole-body paralysis, and three cardiac emergencies within 8 days. “There were 50 doctors in the room around our baby, and I couldn’t do anything,” Adrian said. “You’re kind of helpless.”

On November 28, 2024, Lianna finally received her re-engineered T cells through an infusion of tisagenlecleucel (Kymriah), the first and, so far, only FDA-approved CAR T-cell therapy for pediatric leukemia. Within weeks, her cancer began to disappear. “Out of everything that we’ve done, CAR T was the easiest on her body,” Adrian said. “It used her own cells, and her body absorbed them. It has been so much easier on her bones, her joints, no nausea, she didn’t lose all her hair.”

Today, Lianna shows almost no evidence of leukemia. Her CAR T cells remain active in her body, continuing to patrol for any lingering cancer cells. She visits CHOP once a month for infusions and blood tests, but the Munir-Horn family’s life has slowly returned to normal. She’s back in school, catching up on lessons she missed, and once again playing and cooking with her family.

Reflecting on the journey, Adrian calls research the difference between despair and hope. “Ten years ago, CAR T therapy didn’t exist,” she said. “Without it, Lianna’s next step would’ve been a bone marrow transplant.”

When asked what she’d tell policymakers, Adrian didn’t hesitate: “I believe that it’s vital. We need continued funding for cancer research. Not only is it giving us hope that there’s something else [another treatment option], but it lets parents know that researchers are never going to stop trying.”